Mums speak out on disability, advocacy and activism

For the mothers of disabled children, navigating the roles of advocate and activist can be complex, confronting and a constant struggle. Now seven women – all mothers of disabled children, activists and academics – have co-authored a paper about the growing disability rights movement.

The paper Social-model mothers: Disability, advocacy and activism was recently published in the latest Counterfutures Journal.

Co-author Gretchen Good, from Massey University’s School of Health Sciences, is herself disabled, and has two adopted children with Down syndrome and several other impairments.

She says the paper aims to highlight the work of advocate mothers and share stories of success.

“We also aim to provide recommendations to mothers, fathers, families, schools, academic communities and those invested in social justice, to work towards future positive action on behalf of disabled children.”

Janice Gordon, Dr Awhina Hollis-English and her daughter, Joanna Taylor, Dr Gretchen Good and Caz the assistance dog who works with Dr Good and her two children.

In the paper, the women have focused on the work of mothers as advocates, but say this is not to diminish the work of advocate fathers, grandparents, teachers or disabled people, but in recognition that mothers of disabled children are far more likely to take on caring and advocacy roles.

Dr Awhina Hollis-English, from Massey’s School of Social Work, says at times her academic role has been intimidating or distracting for practitioners when she has been seeking support for her disabled daughter.

“Particularly for those I have taught, or who are interested in my area of ‘expertise’. It’s frustrating having to be the one who has to remind the professionals to stay focused on my daughter and her needs – pointing out where there are gaps and real life challenges for us, while the professionals are looking for cultural supervision or professional guidance.”

Joanna Taylor, a professional clinician from Massey’s Psychology Clinic, is a mother of six, including an adult son with Autism Spectrum Disorder. She says the time and energy put into disability related advocacy for her son, is often overlooked.

“The message is so often ‘It’s your kid, deal with it’. Try as we might, we can’t make the day more than 24 hours long. So we steal hours from our sleep time. Researching medications and sorting out crises – this is middle of the night stuff. We live with dangerous levels of sleep deprivation.”

All authors agree, their roles as mothers have also extended to becoming skilled negotiators, activists and spokeswomen. Dr Good says when advocating for herself or adult peers, she can pick her battles and let some things go, but admits, “This cannot happen, or cannot happen easily, when advocating for children.”

And they can all recount times when their child has been discriminated against due to their disability. Dr Good says her son was denied access to play equipment at an outdoor festival due to his facial features.

“Our eight-year-old son was physically removed by the operator from playing, although the operator was willing to let our daughter, aged five years, climb onto the equipment, because her facial features are not so pronounced and he did not recognise that she too has Down syndrome.

“While there was a victory of sorts a few days later, after lots of complaints from the disability community, the operators announced they would be operating ‘more inclusively’ in the future, the distress to my children and family lasted for a days. It shouldn’t be this hard,” she says.

Existing literature focuses on grief, loss, adjustment and the stress related to parenting disabled children. But the paper’s authors want to go beyond that, and improve things for those standing up for children’s rights.

They have outlined a set of key recommendations for advocate and activist mothers and professionals working with whanau living with disabilities, including seeking support, recognising the skills of advocacy and activism and calling for further research in this area.

Mothers of disabled children: Need to take care of themselves, recognise and support each other and have confidence in their own skills and abilities as advocates and activists.

Professionals: Should listen to and recognise our expertise. “Too often we are simply shut down by professionals, educators, medicos and others within the systems we have to work with,” Dr Good says.

Funders, policy makers and gate-keepers: Please allow us the room to enjoy our families and our children. Do what you can to alleviate our stress and believe us when we tell you what our children’s needs are. Don’t ask us to be the eleven therapists our child might need. We would prefer to use our passion to parent our children rather than to fight the health, education and social systems, Dr Good says.